Just got back from my Day 1, Cycle 5 trip to OSU. 4 cycles down, 10 to go.
Day 1 of the first 8 cycles involves the obinutuzumab infusion on top of the daily 7 pill regimen of ibrutinib and ventoclax. The clinic was a mob scene, so everything took a little while longer than usual, but I was out by 3:30 and had plenty of time to catch a 6 pm flight back home but no time to explore a new coffee shop.
While everything is still proceeding more or less to plan, a few of my numbers went in the wrong direction. In particular, LDH, which measures liver function and AST, which measures kidney function were high after being in range last week. Apparently I’m not the only person experiencing this, and they aren’t sure which med is causing this reaction. Mind you, they don’t start worrying until the AST number is 5 times average and mine is nowhere near that, but it was still a bummer. IGG and IGA, tests that measure antibodies, were also up and high. My neutrophils were also down to 1.09, again far from the .5 where they deny treatment, but low enough where I really need to avoid bacterial infections and I need to take a trip to the ER and will probably be checked in if my temperature is over 100. No sushi, oysters or salad bar for me for awhile.
On the plus side, my platelets were 222, well over normal, which is 150, so I’m not at risk for bleeding out or bruising.
I know objectively I should be grateful I’m doing as well as I am and in particular, that I have no major side effects and I have good energy. While everyone is doing fine on the trial, the impact on my quality of life and side effects has been minimal compared to others. Notwithstanding this, I did feel a little sorry for myself. The numbers were a reminder that I’m not invincible, and there is nothing that I can do other than do a blood draw locally next week to make sure those number don’t get any higher.
While I was down in the moment, I'm posting this a day after I wrote it, and I do feel better and back in the ring to fight the fight. I'll be back in 4 weeks to tell you about Cycle 6!
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thompsonellen
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You're doing well! I'd say your results are better than some of us in W&W - and you're only part way through treatment .
Just some clarification:
* AST is one of the liver function tests, but levels are not specific for liver damage - it can be raised through other causes. The others are ALP and ALT.
* LD or LDH (Lactate Dehydrogenase) is often used as a marker of tissue breakdown and it can also be an indicator of CLL tumour growth. A higher than usual result can also be caused by a poor/difficult blood draw (cells get broken and discharge the intracellular LDH into the blood serum).
* Kidney function is checked by measuring Serum Creatinine, Glomerular Filtration Rate (GFR) - usually estimated (eGFR) and Blood Urea Nitrogen (BUN), often called just Urea.
Neil I was in clinic that same morning and my IV draw, some were hemolized so they came back and did a vein draw for the second set. Can you explain more in-depth please what can go wrong. Could it of been something going on in the lab? It was a typical 30 min turn around for results. My numbers all were good on second draw.
Hemolysis is the breaking down of red blood cells which can be caused by an alarmingly long list per: bd.com/vacutainer/pdfs/tech...
Given the 30 minute turn-around, I'd suggest it was due to the wrong technique, or subsequent treatment of your blood sample that caused your poor results on the first draw from your IV. (Note the statement in the reference 'Several studies have noted that when blood is drawn from a peripheral IV catheter, a higher incidence of hemolysis
occurs due to frothing of the blood from a loose connection of the blood collection assemblies.' )
It's great that this was recognised and a second sample taken giving more accurate and reassuring results. This is why it's important to track trends and question unusual results, but it can be hard to know what's the true cause when you are going through treatment changes! (I make a note of when my blood draw/sample didn't go smoothly and don't get worried about a higher LDH reading in those circumstances.) I'd expect/hope? that labs would pick the characteristic patterns of unrepresentative tests - as was done in your case, but you can't count on it.
Thanks for the primer. The other liver panel items were normal. Maybe the 400 mg is causing more cancer cell destruction and that's why it's elevated. Or maybe there was a lab issue like DanaM experienced.
I'm well aware I'm doing better than many on W&W which is why I don't feel entitled to complain about anything or feel sorry for myself. Generally I don't.
Again, thanks for your reply and expert moderation of the forum generally.
You are allowed to feel sorry for yourself... it is alot! Hopefully, the lows and highs will stabilize and you will continue the journey towards MRD Negative. I am rooting for you all. You are true pioneers!
Thanks for continuing to post even after a down day. I think so many of us want to continue feeling, if not invincible, at least still capable and in control of our day to day lives, but CLL has a way of making us wobble occasionally. Keep bouncing back!
In searching for some perspectives on a higher LDH number during treatment I found your post from three years ago. First of all I hope you are continuing to do well long after your clinical trial. I have just finished cycle 5 of a trial similar to yours: I+O+V. It’s a phase 3 trial at Ohio State. In my last two blood draws my LDH has been elevated. My doctor at Mayo Clinic yesterday didn’t seem too worried about it. I’m wondering how long it took your LDH number to return to normal during your trial and hoping that this is just a response to treatment and nothing else. Thanks for anything you are willing to share. All the best.
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Ibrutinib / Venetoclax 
